Does anyone else have MGUS?

Hi @steffiney, a bone marrow biopsy is a valuable tool for your hematologist to get a good look at the blood manufacturing center for you body.
The biopsy and examination of a core sample from the marrow and aspiration of peripheral blood can show whether your bone marrow is healthy and making normal amounts of blood cells. Doctors use these procedures to diagnose and monitor blood and marrow diseases.
Your doctor is trying to get the answers he needs to make a firm diagnosis for you. It can take a week or more to get a full report on all the in-depth testing of the samples.

You were recently diagnosed with MS as well?
We have a number of members who also have MS with numerous discussions throughout several support groups such as Autoimmune, Spine health, Brain & Nervous System. These can be found by typing in MS in the search bar at the top.
But here is one link for you to start with on MS and Mindfulness with an article by Doctor Amit Sood.
https://connect.mayoclinic.org/discussion/ms-mindfulness/

Are you currently in treatment for MS?

Thank you so much Lori. Obviously I’m scared to have the biopsy so wanted to see if it’s routine for MGUS.
Yes, I was diagnosed withMS as well, that is how they found the MGUS. I was told the MS was mild and because I am in my 50’s, the dr chose not to treat me. I just take 50,000 units of Vitamin D a week.

I’ve had 13 bone marrow biopsies and from experience I’ve chosen to have mild sedation with mine. Three were with no sedation and the others were with the twilight sleep, the type offered with a colonoscopy. Takes about 15 minutes to have the procedure done and you wake up remembering nothing about it…no discomfort.
Experiences for people run the gamut from feeling little to nothing and others have less tolerance and would rather be out. I’m a tough old bird but finally decided to try the offered sedation…never looked back after that. Easy peasy. Woke up to Lorna Doone’s and Apple Juice. ☺️

It’s good news to hear your MS mild and not needing treatment. Were you having weakness symptoms? How was the diagnosis confirmed? With MRI and lumbar puncture?

I have MGUS. I am a 78 female and I was diagnosed about 6 months ago. Have had all tests my hematologist requested except for bone marrow biopsy. That test scared me on many levels. But 6 months later I’ve requested to have the test done. I have been obsessing over the diagnosis and possibility of cancer diagnosis. I have been obsessing over test so I’m hoping the obsessing will stop once I have the b.oops y. Doc said it could take 10 years for MGUS to change to something else (worse)

Wow! I didnt know you could have any sort of sedation so that makes me feel better. You are a warrior! Do you have MGUS, is that why so many biopsies?
I had an MRI for the MS after having weakness and tingling in one leg. My MS doctor said that the weakness and tingling is not due to the MS though which is puzzling. I did not have the lumbar puncture. He said based on the lesions in my brain, he was 99% confident I had MS. The vitamin D definitely helped with symptoms but I still have the weakness/tingling every once in awhile.

I am relatively new to this club also. What is CRAB criteria. I will be seeing my Hematologist the end of this month and would like to know if I have some questions I should be asking.
Gina5009

Hi @steffiney, I had Acute Myeloid Leukemia and a subsequent bone marrow transplant 4 years ago. In fact I just celebrated my 4th rebirth day June 28th and feeling 99% back to my old self. Which is quite miraculous considering my odds at diagnosis were not very encouraging. Thank you for saying so, I do quite honestly feel like a fierce warrior but unfortunately, I’m not occupying the impressive body of Wonder Woman. 😂 But pretty proud of how this old bag of bones overcame the continual challenges I deflected with my super powers. Joking aside, it’s vitally important to remain positive, keeping a sense of humor and always looking forward!

The Vitamin D for your MS symptoms is really interesting! I’m glad to hear it’s helping with your symptoms. There are so many new discoveries about the possible causes for MS along with research and treatments. It’s really positive now to have options.
Do you see a hematologist for the MGUS?

Hi @milo3986 I was just discussing the bone marrow biopsy for MGUS with @steffiney who was also recently diagnosed with MGUS.

I know all of this just scares the socks right off a person…talk of potential blood cancers, bone marrow biopsies, treatments, etc.. I had a very aggressive form of leukemia 4 years ago and now in a durable remission and feel like nothing ever happened. Basically, ‘the worst’ happened and I’m alive, healthy and here to try to help others from living in fear ‘of the worst case scenario”. 🙃

Your MGUS may not progress or require treatment for many years as your doctor mentioned. So it would be awful living in fear for 10 years with ‘What if this happens?”. I know it all sounds frightening and you feel like you’re waiting for the other shoe to drop. But my attitude is that knowledge is power and this biopsy will give your doctor the facts they need to diagnose. You in turn get the facts you need to face whatever is necessary head on! I think we are our worst enemies most times with the stories we can tell ourselves of the worst case scenarios and most never materialized.

I’m going to reiterate for you part of the message I wrote to @steffiney regarding bone marrow biopsy for MGUS.
A bone marrow biopsy is a valuable tool for your hematologist to get a good look at the blood manufacturing center for your body.
The biopsy and examination of a core sample from the marrow and aspiration of peripheral blood can show whether your bone marrow is healthy and making normal amounts of blood cells. Doctors use these procedures to diagnose and monitor blood and marrow diseases.
Your doctor is trying to get the answers he needs to make a firm diagnosis for you. It can take a week or more to get a full report on all the in-depth testing of the samples.

I know you’re obsessing over this so I’d really encourage you to schedule the biopsy. Ask for sedation if you’re feeling anxious. It’s a lovely lala-land sedative so you have no knowledge of what’s going on…painless. ☺️

What do you think?? Isn’t it better to just get it over with?

WOW! I’m so happy to hear you won the battle! Definitely wasn’t lying when I said you were a warrior! I appreciate you chatting with me as well. Receiving a new life altering diagnosis can be a scary place. I do have a hematologist for the MGUS. He’s the one that mentioned doing the biopsy as my situation has stumped him. So now I wait after just having my blood done again. My numbers went up so I know that can’t be good 🥺

Hi @gina5009 CRAB criteria is a means of staging multiple myeloma.
Monoclonal Gammopathy of Undetermined Significance (MGUS) may transition to smoldering myeloma and possibly multiple myeloma over time.
Multiple Myeloma (MM) has specific characteristics that often won’t show up in a patient with MGUS until it starts progressing.

Those are referred to as CRAB criteria for helping to stage Multiple Myeloma.
~elevated Calcium
~renal failure
~anemia
~bone lesions

So if someone has MGUS and have none of the criteria for MM their doctor may defer testing until later. However, not every doctor is the same and being proactive with tests such as a bone marrow biopsy at an earlier stage such as MGUS can set a bench mark reference point for the future.

Here is an article about diagnosis Multiple Myeloma. I’m only putting this out so that you can see what CRAB stands for.
https://www.healthline.com/health/multiple-myeloma/crab-multiple-myeloma

I know you love to research and you do your homework so have your list of questions ready for your doctor. Is this your first meeting with the hematologist?